posted
I am a caregiver for a woman with severe, chronic lyme.
She's had a llmd who has not varied treatment and doesn't seem to have a "next step". She is taking mepron and many supplements.
She has one more visit to this llmd and then we're going to check out some of the recommended llmd's whose info came to us through this site.
In the meantime, she believes both the lyme and babesia infections are killed, but her symptoms are not improving.
How long could she experience symptoms without having an infection? At some point, do we assume the infection is still there and try a different method of antibiotics?
Has anyone tried Cellfood DNA/RNA? Dimethyl Sulfoxide? Helicrysm? All should help nerve regeneration. Not sure how they work.
She's had two previous experiences of starting to get better for a few weeks and then slowly deteriorating over a month or so. She had an upswing a few weeks ago and is now in the losing ground process.
She has had her magnesium levels tested and they're fine.
Ideas, encouragement and/or shared experiences would be great. I read to her from this site.
Thank you!
mp
Posts: 12 | From Denver, CO | Registered: Aug 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
She could also have viruses as part of her problem...HHV-6, EBV, and enteroviruses are not treated with antibiotics or mepron.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
She may still be dealing with parasites.. Have her try Purge Parasitis, I can't say enough about this product. It allowed my daughter to make a turn around when she was dealing with Cardiac Lyme.
I have no affiliation with the company. I just feel that it's a great product that's composed of a lot of good things that don't harm the body in any way.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
lulu- how did your daughter get dx with cardiac lyme? what tests did they do?
thanks
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
BackinStOlaf: Her symptoms stemmed from Babesia. She had ekg's, 3 holters, echo,.. was set to do more testing, but since she is improving there hasn't been a need..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I agree with lulu about treating for parasites. Parastroy is also an excellent product and is very inexpensive. I have had great success with it. I buy mine at vitacost.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
The patient has been tested for parasites, lyme, and babesia. She is supposedly clear of all. She does not have any active bacteria or virus in her body according to her alternative healer.
However, she is not getting better.
Can symptoms remain if the infection is truly gone?
For those of you who have neurological symptoms, what do those symptoms look like? The patient wants to know if others share the same as her.
She wants to know if you can ever truly heal from lime. How would you know if you are healed?
If you're cleared from lime, would you have to be bitten by another tick to get it again, or is it something that stays in your body and can flare at any time?
mp
Posts: 12 | From Denver, CO | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Aside from possibly the Bionic 880 protocol used in Germany, there is no test that can prove lyme has cleared. Remission is the goal but flares can still occur from time to time. Yet, if promptly addressed, a flare need not send one back to square one.
If she had lyme, she can never really be clear of lyme. There is no cure by current methods. No "healer" can say it's gone. The infection is never "truly gone" but a good remission can be achieved.
Treatment needs to continue at least a couple months past clear remission of symptoms.
While there is more than just lyme going on for all lyme cases, until a good remission is achieved, one cannot assume they are over lyme, even if there are other coinfections, dysfunctions and deficiencies. Assumptions can be very dangerous regarding ANY tick-borne of chronic stealth infection.
Still, assessing for OTHER infections is wise. Sometimes, if they are present, lyme will not get better until the overall infection load is lifted. And that includes parasites.
HEAVY METALS also really drag down most lyme patients.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
SUCCESS STORIES -
Posts: 48021 | From Tree House | Registered: Jul 2007
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onbam
Unregistered
posted
It is unknown whether or not it can be cured at this point; a cure has never been demonstrated with any currently available treatments, and the vast majority of patients relapse. If you're symptomatic, you have to treat.
Sounds like she may need a more flexible doc.
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
quote:Originally posted by mphcare: The patient has been tested for parasites, lyme, and babesia. She is supposedly clear of all. She does not have any active bacteria or virus in her body according to her alternative healer.
However, she is not getting better.
Can symptoms remain if the infection is truly gone?
For those of you who have neurological symptoms, what do those symptoms look like? The patient wants to know if others share the same as her.
She wants to know if you can ever truly heal from lime. How would you know if you are healed?
If you're cleared from lime, would you have to be bitten by another tick to get it again, or is it something that stays in your body and can flare at any time?
mp
Unfortunately, those tests can be very inaccurate. She should be diagnosed based on symptoms not on those tests. Many on here are treating without ever getting a positive result and having a good outcome.
posted
I can't thank you all enough for the responses. I've read the patient all of this dialogue and I can see the relief on her face that she is not alone in her struggle.
She is curious how you all manage to type so much? I am wondering if any of you have voice activation on your computers.
Is the basic assumption that if she still has symptoms she still has an infection?
Again, so much thanks.
mp
Posts: 12 | From Denver, CO | Registered: Aug 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
In my post, I use the quotation symbol above the post I'm responding to and that brings it down into your answer. You can also edit using those symbols as well.
It does sound like she is still dealing with an infection. Even with normal magnesium levels, it sometimes helps to supplement. I have normal levels but when I take it, it helps me sleep at night and decreases palpitations.
If she's dealing with neurological symptoms, there are natural supplements she can take, if she doesn't want to take abx. I find wormwood (artemesia) tincture helps when I combine it with Colloidal silver..
posted
Dr. B's guidelines say to treat for at least a couple of months past when you become symptom free.
That implies that if there are still symptoms, there is still active infection.
Because of the fact that so many ID and mainstream doctors tell them the Lyme is gone after a couple weeks of treatment, even when they still have the same obvious symptoms they started with, and because no test can prove it is gone (and may never even show it is there when it it IS there), I would be very wary of anyone saying the Lyme is all gone when symptoms are still present.
It is true, however, that symptoms can be from a combination of causes.
I don't have neuro symptoms and normally don't have trouble typing. Once in a while if I have bad fatigue, lifting my fingers to type feels like too much effort because my fingers feel too heavy.
I don't know what to do if typing is difficult, but I am all for every kind of adaptive technology that can make someone's life easier. There are various inventions for people who can't type because of carpal tunnel or something, so they should be fairly widely available. That includes voice software, a foot-operated mouse, screen reading software or zooming capability to make the print larger, etc. Some of these already come on all computers and just have to be turned on. There are things like "sticky keys" so you don't have to hold down the shift key while you press the next one.
The gaining and losing ground is typical for everybody with some version of this disease. Nothing moves in a straight line.
The one thing I want to tell her is, don't ever give up. The disease tries to make you depressed or make you think that whatever you try will not work, so that you will give up and quit fighting it. Don't fall for its little trick. Keep the faith that you are going to get well, and don't stop trying to get there.
Good for you for being there for her, and tell her I'm sorry she's been through so much.
Light
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by mphcare: She has had her magnesium levels tested and they're fine.
Magnesium tests will show the level of mag in the blood, not in the muscles and nerves. So getting blood test for magnesium will not tell you what you need to know.
Supplementing with magnesium and pharmaceutical quality fish oil will help the liver to detoxify the neurotoxins left by the dead Lyme bacteria.
This will also help the nerves and the fatigue.
How mobile is your client? There are various bed trays available if a person is flat in bed, to hold books or laptops.
I went to a doc who followed these guidelines. He treated me until I was symptom-free and then required me to continue on meds for an additional number of months. That's the Burrascano way.
See this quote from pages 16-17:
"As the spirochete has a very long generation time (12 to 24 hours in vitro and possibly much longer in living systems) and may have periods of dormancy, during which time antibiotics will not kill the organism, treatment has to be continued for a long period of time to eradicate all the active symptoms and prevent a relapse, especially in late infections. If treatment is discontinued before all symptoms of active infection have cleared, the patient will remain ill and possibly relapse further."
If the patient is treated sufficiently and still has symptoms, the doctor has to look for other causes such as an untreated coinfection, mycoplasma, etc.
In my area, every person with lyme also has babesiosis and bartonella.
I completed my lyme treatment over 5 years ago and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
I had undiagnosed lyme, babesiosis, and bartonella for 10 years before a doctor figured out what was wrong with me. I had numerous neurological symptoms during that 10 years including:
facial drooping (a mild bilateral bells palsy) feeling of being stabbed by thousands of pins and needles trigeminal neuralgia extreme muscles weakness (could not hold my mouth open to have my teeth cleaned; couldn't stand for more than a minute) feeling of liquid fire flowing down my jaw continually for months stiff and sore neck lots of headaches sound sensitivity loss of response to any sexual stimuli false menopause dry eye dry mouth horrendous fatigue insomnia, fractionated sleep derealization
Here's a website that tells you proper treatment for the coinfections babesiosis and bartonella:
She can compare her treatment to that listed here to decide if she has gotten adequate treatment.
These diseases require high doses of antibiotics and combinations of meds. One med is not enough. For example, for babesiosis, it takes mepron and zithromax plus artemesinin (an herb) taken a few days in a row each week.
Mepron alone will not get rid of babesiosis.
When the patient is on only one medication for these diseases, it is not unusual that initially the medication brings some improvement, but ultimately the patient backslides. That is because one medication cannot eradicate these diseases. They can change into other forms to avoid being killed by just one medication.
Also, it is not unusual for a person to have to treat each of these diseases for 1 year to clear them.
Posts: 9931 | From Maryland | Registered: Dec 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
The people on here are all sick but in different stages of the disease. Some respond faster than others to treatment. I responded fairly fast, but I have not gotten well and I continue to relapse. The fall and winter are usually bad for me, which I hear is typical (just like virus').
There are some very informative books that will help you understand more about the disease, it's treatment and keeping faith that she will recover. I have two favorites that I just could not live without. The first is the Lyme Disease Solution by Dr. S and the other is Cure Unknown by P Weintraub (? not sure of that name -my lyme brain can't remember). You can also download Dr. Burrascano's treatment protocol - I think it may be somewhere on this site. I took it to my first doctor and continue to reference it.
We have to advocate for ourselves and each other because there is so much ignorance in the medical community about how to treat this disease. You have to be proactive, change doctors when necessary and make sure the treatment makes sense to you - don't just blindly trust.
** moderator's note - edited to remove LLMD's name **
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
She needs a real LLMD, which it doesn't sound like she's had at all! I don't know if she is able to travel to see one, but you could post in the Seeking a Doctor section, and see about an LLMD or two that is as close as possible.
Many people travel quite a ways to see their LLMD, as there are not good ones everywhere. Then, after the first visit, you can continue for a while with phone consults.
Both of you need to get a good LLMD for her. Onward and upward.
Posts: 3771 | From around | Registered: Mar 2008
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